Thursday, February 7, 2013

Hurry up and wait...

Yep, the title pretty much sums up our life these past few weeks, we are waiting to hear back from the GI specialist at Johns Hopkins as to whether or not he is willing to take Lucy's case. I was told that they are discussing Lucy's case today. My stomach is in knots, as is my brain, my heart, and just about every other organ in my body today. Drew and I had a wonderful opportunity to meet with the palliative care social worker/counselor on Monday, his role is to talk to us about all of the emotional stuff that surrounds having a chronically sick child that is "end of life"... this is no easy feat! We enjoyed meeting with him, and will continue to do so. As we were wrapping up our time with him he asked us one last question..."What are you going to do if the doc at Hopkins says no?". Good question, ahhh, umm, not sure...we really need him to say yes!

To add to our turmoil, our beloved Dr. R is leaving on a medical missions trip to Haiti on Monday for two weeks! I mentioned in my previous post that we have a million obstacles in our way, him being away accounts for more than half of those obstacles. I finally mustered enough courage to ask Dr. R what we we're going to do if Hopkins says no. He looked at me and said honestly, "I don't know, I guess we'll keep her on antibiotics until...". I didn't need him to finish his sentence, instead he set out to find the GI fellow and asked her to pester(one of his favorite words and activities:) the doc at Hopkins today.

Miss Lucy is holding her own, for that we are so grateful. Dare I say she is stable, this is Dr. R's least favorite descriptive word, he likes to say that dead bodies are stable. She sleeps a good majority of the day, but when she is awake her personality shines. Her body is not as strong as it once was, she spends most of her days in her bed, when you do get her up and about in her wheelchair she tires very quickly. She is in need of blood, but we are holding off on transfusing her in the hope that we get a date for an ERCP, we would like to tank her up just prior to her undergoing this procedure.

Here's hoping we hear something soon...as for now I am going to continue to hurry up and wait some more.

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FOR THE LOVE OF LUCY RESEARCH FUND

In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

ENERGY FOR LIFE WALKATHON

UNITED MITOCHONDRIAL DISEASE FOUNDATION

We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!